To protect the privacy of my family, I have to be vague, for which I hope you will forgive me. I’ve always been very open about the heartache of my daughter Sammi’s first eight years: the confusion and the instinct I had to push through it, the fear I had about her breathing and eating, the confidence I somehow found inside me to urge all of us forward to a real resolution to her challenges. As much as was age-appropriate, I have always asked Sammi what she felt comfortable sharing through this blog and through other writing. She wants the world to gain something from her journey, as do I.
But this last month, the heartache and the excruciating journey have belonged to my parents, and it has been dramatic, painful, and frightening on a physical level for them and on an emotional and spiritual level for all of us. It kept me away from home for most of the month, away from my husband and daughters and a million miles outside my comfort zone. It did not and cannot end well, but that is all I can say about it without betraying their privacy. Continue Reading…
No more restaurants, my husband and I said to our daughters when the stay-at-home order began. And no takeout. Just too risky.
But I’m a good cook — inventive, curious, mostly patient. I’ve been pressure-tested in ways that have made me adaptive and flexible. I understand substitutions on almost a molecular level because, for the first nine years of my daughter Sammi’s life, I learned to cook in a gauntlet of food restrictions I could never have predicted.
I learned to cook first without almost all forms of acid: no citrus or tomato or chocolate for my toddler with severe reflux.
Then I learned to cook without dairy, soy, eggs, nuts, and wheat (all at once) when she was misdiagnosed with eosinophilic esophagitis.
So after all of that, cooking normal, unrestricted meals every night while we’re staying at home seemed like it would be no big deal. At first, it was exciting — unlimited time to make whatever I wanted. I even started a journal for the first time since middle school: a few sentences about our day and then a note about what was for dinner and what we watched on tv. My tone was light and my dinners were pretty impressive. I felt proud of the fact that my family could eat well — both in quantity and quality — with me at the stove.
Over the ensuing weeks, I learned to be careful about planning in a whole new way than I’d learned when Sammi was little. Now she and her sister Ronni are both teenagers, and instead of planning around holes in our diet from medical restrictions, I started planning around holes in our diet from grocery shortages. It was — and remains — nothing like shortages in the history of our country or the world; the stores are full of food, and after one fraught trip to our local grocery on March 19, we’ve been ordering our supplies online. They simply arrive at our door, where we sit on the stoop and wipe down package after package of treasures, but always, there are some things the grocery store doesn’t have. Continue Reading…
I was newly a mother of two when a doctor – a kind doctor, a thoughtful doctor – told me that my new daughter would almost certainly end up in the hospital with every respiratory infection she got. Not a great idea, he said about twice-a-week daycare. Probably not, he said about baby-and-parent music classes. No, I don’t think so, was his answer to my hopeful questions about baby swimming, a smaller daycare, a playgroup. After two hospitalizations in her first five months, I believed him.
Through that first winter watched through front windows into an empty courtyard or through car windows into big sister’s preschool, my new daughter and I eyed the world with suspicion: me because it contained too many germs and her because nothing in it made her feel quite right. There was no sleep, no break, no time apart for the two of us to learn the beauty of missing each other and being reunited. There was just us, with the world outside the window a mystery.
On the day that we brought you home from the hospital, we were nearly out of the parking garage when I remembered the milk — my milk, your milk, stored in the infant intensive care unit freezer. I’d been waking up every three hours for over a week to pump it and bring it in a little cooler to you each morning. I sprung out of the car, wincing from the cesarean section scar still healing on my abdomen, and went back into the hospital for it. It was the first thing you brought into our home — you, your tiny perfect self, and twenty-six ounces of expressed breast milk. Continue Reading…
It was December, 2013, when we had that awful conversation, the doctor and my husband and I.
It was cold out, and my body wasn’t ready for it yet. That’s why my chin was quivering as I sat in the upholstered chair next to the window, cradling one phone while my husband stood alert in the next room with another extension in his hand. It was cold outside, and I didn’t have my winter metabolism running by then, so my hand shook. It shook so much that the paper in front of me was blank the whole time. I never wrote anything. At the end of the conversation, when the doctor’s excitement oozed through the phone because the missing piece might really fit in the puzzle this time, my paper was blank and my toes were tucked under my bottom in the chair, holding me tightly into the space where I was curled now, so cold, so cold because I was near the window, the winter window, on a frigid day. That’s why I shook. That’s why I shivered.